About Me

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly,
mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.”
-- Baruch Spinoza

Saturday, March 04, 2006

To Say or Not To Say..."Autism"

Henry has been away since Thursday and I gave the nanny the weekend off. It’s just been Adam and I. I like these times although they keep me busy – morning to evening uninterrupted by “intervention.” This morning I took Adam to get his haircut at Melonheads.

We arrive early in the morning, vanilla soy latte and breakfast cookie with blueberries in-hand. Typically, I would just grab the latest book that caught Adam’s eye and let him flip through it as I placed him in a Thomas-The-Train seat. Usually, he would just flip happily through the book, letting Sherry, his regular hair-cutter, talk to him sweetly, cutting his hair gently and quickly. We discover that Sherry has unfortunately left Melonheads to pursue greener pastures. After I place Adam in the train seat, he wants nothing to do with Curious George – a book of Opposites. He is much more interested in the streams of other children coming in, the bins of toy cars ready for his plucking. It is a busy morning and instead of the usual attention, Adam waits a fairly long time until a crusty Asian woman with long scissors just starts going at Adam’s hair from behind. No introduction – no sweetness that one would expect of a children’s hair-cutting salon. Needless to say Adam leaps into my arms screaming bloody murder. Other parents stare and in a flash AUTISM is about to roll off my tongue ...but I manage to hold my breath.

“It’s okay,” I whisper calmly in Adam’s ear while he holds on to me tightly, trying to get out of the train, scissors still swiping off uneven clumps of hair. “You’re just getting your hair cut. You will be okay.”

What would AUTISM have meant to this gruff woman who didn’t seem to care except to get her next customer and tip? Besides, wouldn’t any child have reacted to a stranger putting them in a headlock with a razor next to their ear? Even if I’d said that he gets “scarred easily,” or is “sensitive,” would she have cared?

Adam manages to seat himself back in the chair, even though he continues to cry. In about five minutes, the ordeal is over and we grab a lemon lollipop from a clear bin by the cash.

I think all morning of when, how, and if to use the word autism at all – when it might stigmatize, marginalize, and remain meaningless except to possibly suggest that Adam is “not normal” -- something I do not wish to convey. I even struggle to use it now with persons in the know, who may be able to help him -- not because I am ashamed of the word or that Adam is autistic, but because it doesn’t mean the same thing to every person, and every person with autism is not the same.

As this thought agitates me, Adam carefully works on the same lollipop I gave him at the salon for about thirty minutes as we drive to pick up shoes to match the new Strenesse suit I will wear when I shake President Clinton’s hand tomorrow night (my birthday is on the horizon so a new suit seemed in order). I shuffle him to music class, the French boutique an irresistible reprieve.

Music class is a challenge today. We arrive a little early from the efficacious shopping spree and Adam has a chance to move around while eating pizza Goldfish and drinking water. At the beginning of the class, Adam is visibly distraught. He is resisting control these days and doesn't like being pulled into circle by the music teacher. I decide this week to give him more choices over personal things like food, since he is also being toilet trained and has a couple of new therapists in his life. I figure he needs to also feel in control of his Personhood as I reflect on the week’s “No, No, No, NO’s!” that have bellowed out of him. Ah, I am grateful for those. I waited a long time for them. Nonetheless, I am a little beat from power struggles and decide that he needs my empathy and support. I step in, acting as Adam’s shadow. He has missed a few classes – a trip to Florida, sick with the croup the weekend before that. We missed instrument and boat-making, so in fact, we have missed a lot -- without my support today, and he is like a boat without a mast.

Today we sail on a pretend ship, looking at pretend things on the pretend ocean. Adam enjoys the pretend waves as we rock to and fro. This “pretending” is tough, needless to say, but by the end of the class, between some successes – of moving and imitating and listening attentively to various sounds – Adam ends the session with a smile.

Pretend. Ugh. How does one explain to another who doesn’t understand autism that it’s hard for him to understand what he cannot see? What’s the point? It’s just a weekend music class – we’ll practice at home. There are parts of the class that he truly enjoys and I don’t want him to miss out on that.

When Adam was first diagnosed, I was urged by another mother of an autistic adolescent to get a Disabled Parking Permit. She said she used hers all the time. I couldn’t do it. Adam is not physically disabled. He did not have meltdowns at the mall. Although I am entitled to get one, and was tempted by the ability to park anywhere I wanted, I didn’t want that on my conscience – there are people who physically need to use that spot.

Autism still means so many different things to different people. I sometimes have trouble using the word now because it doesn’t have any ONE true meaning for most people. Just like Adam’s pretend ocean –it is difficult to understand what you cannot see. Adam doesn’t really look any different, although he may sometimes act a little differently, and even that is difficult to discriminate. PreRainman Autism talks about things like this all the time, before the “age of autism,” before the time when everything has to be symptomatic of something.

I have been considering this week that the autistic community just might change the face of the disability rights altogether – for the better. There is a unique opportunity here for the vocal, articulate people with autism to communicate autistic experience in a society that barely tolerates difference. Then again, I wonder if we just might come full circle.

17 Comments:

"I have been considering this week that the autistic community just might change the face of the disability rights altogether – for the better."

This is something that I have been feeling all along. And one of the reasons I feel that everyojne in the autism community needs to learn how to respect, include and accept one another in order to find these things outside of our community.

It sounds like Adam was having a rough day all around. Personally, I rarely use "autism" around strangers, unless they get rude. Then my retort is usually intended to "help" them realize that not everyone fits their expectations, and it's not always for the reasons they assume. Though, when people try to hold a conversation with Alex or Ben, I do tend to tell them "he doesn't talk much" and leave it at that.

Perhaps the Asian woman had a different sense of cultural mores? I have seen a sort of "gruffness" with Charlie's bus aides and driver (both of whom are South Asian immigrants with limited English). He has grown to be very fond of him, and they of him---they were very worried when he had a fit in the bus one day (that was when he was getting sick) and smiled so brightly when he got on a few days later, quiet but happy.

It is very important that a child on the spectrum be desensitized to getting a haircut. A very effective way of doing that would be to use a token system and run a haircutting program before the child is expected to get a haircut in one sitting. The token system is then faded and the child usually does very well from that point forward, no matter who is cutting their hair. The woman cutting his hair was not trained as a therapist...it is up to us to make sure our children are prepared for the world and good therapy will help us achieve that goal.

I struggle with the decision to declare Jared's autism several times a week. Jared is big for his age (nearly as big as his 11-year-old sister) and looks older than 6, and combined with his smart good looks (not my words! Who are you calling biased?), people are often confused that Jared can't do "normal" things or answer "normal" questions. If he ignores them, I stick with "feeling a little shy today" but when he's supposed to be answering questions at an appointment or whatever, I have to toss out his diagnosis.

But you know, I've been thinking that I need to resist resisting the label. (Hang on, I can make that make sense!) Since I don't think there *should* be any stigma around being autistic, I can't think of a reason not to use the term. Besides which, Jared is so sweet and captivating (What? That's what people say! What are you mumbling about "through a parent's eyes"?) that I think he makes an ideal ambassador for the autistic community. Why should I or he be embarassed about autism? The fact that so many of our children can "pass" for "normal" has given us a different experience than the parents of kids in wheelchairs or with Down's syndrome. But I'm of the opinion that the world would be better off if people realized that even normal-seeming kids can be disabled more than somebody in a power-chair.

I also have resisted getting a parking permit, for just the same reasons as you. I fear that at some point I'll have to get one for those days when Jared's impulse control is too low to get him safely across the parking lot. Now that he's the same weight/strength as a small German Shepherd, dragging him out of harm's way is getting harder and harder. I think I see myself getting a permit and fighting with myself over when to use it. =-)

Interesting insight..I consider all people in that shop might have had some sensitivity -- we've never had a problem there before. I have gone there because they really prepare Adam for the cut and he has never cried...until yesterday.

I have not mentioned my diagnosis to many people: though I do explain it as best I can when I mention it, which probably helps. The usual reaction I get is something to the effect of, "Wow, that explains a lot!" The thing is, sometimes I do find myself wondering if I should be more free with the "label" -- like when I was getting my hair cut 2 weeks ago and a timer (for someone's hair dye process) went off, and I ended up having to yell at the hairdresser to turnitoff turnitoff turnitoff whilst huddling down in my chair and covering my ears. I ended up saying something like "I'm very sensitive to noise" since that was descriptive and true, and I didn't necessarily want to get into an Autism Q&A in the middle of a hair salon at that moment, being a bit overwhelmed by not only the timer, but by the fact that people were touching my hair and that there was a TV on on one side of the salon and a radio on on the other. The thing is, I do wonder when the right opportunities are to help educate people? I try to do it a bit on my blog, but in physical space it's a bit more difficult since real-time interaction with relative strangers means that I could be cut off at any point by a conflicting agenda, and the person would go away with an incomplete and possibly misleading image of what I was trying to explain.

I would like to live in a world where autism can be mentioned in a matter-of-fact manner and have it be a useful explanatory term (like "female" or "human" or "colorful"). I think part of the "problem" right now is that there is so much misinformation out there regarding autism, and the variety of people on the spectrum, that the word doesn't mean the same thing for everyone. Therefore, some people react in a frightened manner when "autism" is mentioned, whereas others minimize it, and others just start asking questions like, "Oh, can he count cards?" If people are educated -- through the writings of autistic persons, through the writings of their parents, through more realistic media portrayals -- then things are likely to change for the better.

I've considered the parking permit thing, though I was never sure we qualified. When to use it would also be a factor. I think it would end up depending on how the day was going, if I should decide to get one.

As for myself, I'm more of a "resist resisting the label" sort. In my experience, people are going to make assumptions whether they have any of the facts or only some of the facts. I'd prefer they have at least some of the facts when making assumptions about my child. Most often I insert myself into very impolite conversations about my child(ren) and myself that are happening right next to me.

I pipe up with something like, "Actually my son is autistic. He's behaving remarkably well, which is why he's being rewarded with a toy. Coming to the store is very difficult for him, because all the noise, and sights and smells are difficult for him to process at once. He's talking so loudly because he's very distracted by the conflicting sensations he's experiencing and he's whining because he wants to get out of here as quickly as possible and genuinely does not understand that we have to scan our merchandise before we can pay for it and leave."

I do this while holding and mushing his hands, or massaging his ears, and find that once the people near us stop talking about him and actually quiet down and give us a little more space (which I usually ask for), that he's able to calm down enough for me to finish the transaction.

Does this mean that the people I talk to have a complete representation of autism? No, of course not. But I've found they're less likely to stare/judge next time we see them in the store. And, since I frequent the same few stores regularly, the cashiers have pretty much gotten it down that they should scan my child(ren)'s toy as quickly as possible and hand it right back to him(them). It's made shopping a much more tolerable experience for all of us.

I've given consideration to the parking permit. There are situations in which it would make things a lot easier. If I had one, though, I think I'd use it about once a month or so, no more often than that.

I know a mother of triplets whose doctor filled out the paperwork for her to get one when her children were little -- just the extra space and shorter distance to get three little ones into the building was a real lifesaver for her. I think she's fine without it now (they're 4 years old now), but it helped a lot when they were babies and toddlers.

I find that we use the "autism" tag when we are with folks who already know that B has Aspergers, but tend to avoid it when we're not. I think that the label is most useful as a reminder to those who know, since I can't assume that a stranger or newer person to us will understand what it means... possibly causing confusion rather than illumination. Even though many of our friends know that B has AS, some are not clear that this is a form of autism, which they may see as a "lower functioning" condition. It is clear to me that B is both autistic & high-functioning, & that he needs people around him who are aware that he can have extreme difficulties at times, & may not seem very "high-functioning" at those times. When I use "autistic" in these situations, I am hoping to remind them not to take B's behaviour for granted & to be open to all the ways he behaves. To expect too much from him can be quite as damaging as expecting too little. I guess I also hope that they will have the high-functioning B in mind when they hear "autistic" & their ideas of what it means to be autistic will be expanded, not stereotyped. Gosh, I hope this made sense... :)

Yep, it makes sense to me. It's interesting to receive this feedback from everyone. I also agree that some people need that Disabled Parking Permit with autism. In our case, we presently do not which is why I made the decision not to get it...for obvious reasons. However, there are different circumstances for everyone indeed. That is what it is meant for.

I also want to live in a world when I can say that word Autism and get the emapthy and support that Adam will require. I also want him to be "presumed competent." The acknowledgement of both is the ideal.

Oh...the last time I took Jakie to get his haircut, we had a similarly traumatic event. The old-school barber, upon seeing Jakies terror and need to cling to me or flail at the buzzing razor, told me that he felt "the women should leave and let us men alone". Ummmm...no....Like you, I almost explained my son's autism, but decided that given the chauvinistic suggestion I had already been given, the explaination would have been wasted. I never went back, but DID find a neighbor who cuts hair, and who is willing to put up with the struggle every few months, in the privacy of my own home.

I hope that like Adam, Jakie will eventually become used to a kind and gentle haircutter.

Sorry about the bad haircut experience. We've been there too, but since your blog is essentially about anti -discriminataion and anti -labelling, "crusty woman" would have been enough to get the point across, leaving the woman's race out of the picture. There will always be less than sensitive people in the world no matter what colour their skin or where they come from.

Please see my comment in post above. Not meant to be racist at all. The woman was Asian and that was a fact. My son is autistic and that is a fact.

The point was, white or black, she simply was not sensitive and a little abrasive.

Sorry it that's racist. No intention to be such. I'm afraid that everyone is so sensitive. When writing, one has to be descriptive. Asian is a description of physical attributes as is Black, Swedish, Italian. Yet, we are always more human than our labels indeed.